Tuesday, June 26, 2012

5 years of exhaustion

The results from my 17 vials of blood are in and have mixed results. Before I launch into that, though, I did some interesting research while I was in Houston last week. I took along all of my medical notes that I had made since 2007 and spent the week reviewing them. That was around the time I started noticing symptoms that were not normal for me:

extreme fatigue
never feeling rested upon waking
no endorphin rush from exercise
back pain
joint pain
muscle aches

My notes to every doctor I saw from 2007 until this year contained this litany of complaints and I got every kind of response from fibromyalgia, not enough exercise, too much exercise, not enough sleep, too much sleep, weak core strength, lack of vitamin D, overwork, stress, infertility treatments, pregnancy, nursing, adoption-related stress, and having 2 toddlers. Over the years my condition has worsened so that there is never a day that I wake up feeling good. I live in chronic pain in most of my joints, my back and now my muscles.

When I have asked the various oncologists what symptoms I might have had with this tumor they all said "none at all to any of the things I had listed".  Well, that was definitive.


I personally am convinced that this tumor could be the cause of why I have felt so bad for so long.

That said, I have gotten the blood tests results and here's what they found:

All of the following tests were within normal range:
Vitamins A (retinol), B12, C, E and Folic Acid

MMP-9 (a marker related to normal tissue and development such as wound healing. It is an enzyme that cancer cells use to degrade surrounding connective tissue and spread in the body. Elevated levels have been found to promote tumor growth and progression and angiogenisis (the formation of blood vessels to tumors))

Fibrinogen antigen (this is the precursor to fibrin, which cancer cells may use to coat themselves to hide from the immune system. It can also increase your risk of heart attack and stroke)

Leptin (leptin released by fat cells regulates body weight in part by suppressing appetite) I am AMAZED that this was normal....

IGF-1 (insulin-like growth factor-1 is a growth hormone that plays a role in promoting cell growth and replication. Low levels can contribute to fatigue)

Activated T-cells (T-cells coordinate the immune response and kill virus-infected and tumor cells)

Raji cells (this is a measure of the immune complexes in the body which is a measure of the antigens which address infection or foreign substances in the body)

And all of these tests were abnormal:
Vit B6 (required for normal red blood cell formation)

Vit D (deficiency has been found to be a major factor in the pathology of 17 varieties of cancer as well as a host of other nasty diseases)

Coenzyme Q10 (facilitates the transformation of fats and sugars into energy. The body uses it for cellular growth and to protect cells from damage)

Zinc (helps control inflammation, functions as an intracellular signal molecule for immune cells)

C-Reactive protein (is a marker of systemic inflammation. High levels of inflammation have been linked to cardiovascular disease, diabetes, Alzheimer's, Parkinson's and cancer)

Interleukin-6 (it is secreted by T cells and macrophages in the immune system to stimulate immune response to inflammation. High levels can lead to muscle wasting and cachexia)

Prothrombin Fragment 1.2 (I knew I had this problem as I was diagnosed with thrombophilia after my second miscarriage. Basically it is an increased risk blood clot formation)

Insulin and C-Peptide (they want to retake this as I was not fasting when the test was taken which showed a higher glucose score than they wanted to see)

NK or Natural Killer cells (white blood cells that help fight infection and disease. They have a special ability to clear the bloodstream of metastatic cancer cells)

So, what to do now? Dr. Block did agree with MD Anderson that radiation sounded like the best treatment plan but he wants me to work on my diet, exercise and stress levels prior to treatment so I can be in better shape to withstand treatment. He also prescribed some supplements that can help with my deficiencies listed above.

Len and I are going to take a step back while I work on these areas and regroup in a few weeks. We are pretty sure, should we choose radiation, that August 6 is just too soon to uproot ourselves to Houston, especially considering that all of the doctors have agreed there is no big rush to treat it.

We will keep you all posted but for the next 2-3 weeks, we are taking a cancer vacation.

Monday, June 25, 2012

Good to be home

Made it back to Chicago safely and on time. The girls were thrilled to see me but I think later on it really hit Kate very hard. She melted down by the evening and was very mad at me. She started throwing some pretty impressive temper tantrums (very much akin to Lucy's tantrums when we first brought her home) both on the day I got home and the next day when I went to yoga and then came home. I spent a bit of time with her talking about how angry and upset it must have made her to have me leave for such a long time. We then talked about how people can leave and then come back. She's back to normal today, albeit more clingy, as I was able to run a few errands and then come home without drama. Lucy has shown her anxiety in a different way. She's much clingier (as in, I have a spider monkey attached to my person most of the time now) but overall fared pretty well. This means that I have two children fighting to sit in my lap, fighting for the most attention, fighting for who can have the most physical contact of our bodies at one time. It's nice to be loved....

Sunday all the fathers of our playgroup got together at the park for the kids to play soccer while the mamas celebrated freedom by eating a leisurely brunch.
 We were fortunate that two of the mamas that have gone back to work were able to join us. From left to right is Margaret, Allison, Sara, Christy, Hema, Krisha (standing), Josephine, me and my mama. The only person missing was Aleks--boo.

Today is Nana's last day here as she flies home early tomorrow. The girls are really going to miss her.
Tomorrow I meet again with Dr. Block. The results of my blood tests (all 17 vials of them) are in so we'll get those results but I also want to follow up with him on what MD Anderson had to say about a treatment plan.

Friday, June 22, 2012

Irradiation vacation

Otherwise known as, "What I did for my summer vacation." Seems I may be spending most of August and half of September in Houston.

All of the doctors (including soft tissue tumor radiologists, pathologists, medical oncologists, radiation oncologists, and surgical specialists in soft tissue tumors) at the tumor board yesterday agreed that radiation was my best chance for success in ridding myself of this tumor in the least damaging way possible. Today I met with the radiation oncologist, Dr. Gunar Zagars, and here are the highlights of our conversation:

There is a 75-85% chance of getting rid of the tumor entirely with radiation. If there is any left at such time as it stops shrinking, then we can consider surgery to remove what is left. That could be years away however. He cited one patient who, 28 years later, is still experiencing shrinkage with her desmoid. To accomplish this, he is recommending 6 weeks of radiation, 28 treatments, every day from M-F, with each appointment lasting 30 minutes start to finish.  The first 4 weeks of treatment I probably won't experience many side effects but in the last two weeks I will probably have some inflammation of my rectum (so, diarrhea) , vagina (bleeding and dryness) and bladder (frequent urination), which should all go away once radiation stops. Long term effects are that my ovaries will take a hit and I will pretty much go into early menopause. He said there are hormonal treatments to counteract the side effects of menopause but that desmoids are very negatively affected by hormones so I need to be carefully monitored if I choose to take them. He was nice enough to point out that, in his experience, no one has ever died of desmoids. So, yay for that!

The actual procedure is called IMRT or Intensity Modulated Radiation Therapy. The link will take you to a pretty cool video about it as well as a short written description of the process. Basically they use higher doses of radiation causing less damage using computer-generated images to tailor both the dose and the target area. My first meeting would be a planning session where I have a mold made to fit my body so I would be in the same position every day. They would then take CT scans which will generate images of my tumor so the computer can aid in mapping the target area and dosage requirements. This type of radiation therapy is highly advanced and minimizes the amount of radiation my other tissues and organs would be exposed to, unlike traditional radiation treatments.

As I said in yesterday's post, it could take 6-12 months before the MRI will show shrinkage (you're welcome Spiff). I will need MRIs every 6 months for a few years and then once per year thereafter.

We tentatively set up my start date to be August 6. That gives me time to meet with my oncologist back at Northwestern (on July 13) and with Dr. Block at the Integrative Cancer Center (on June 26) to review these findings. I'm feeling pretty confident though, that this is the correct route to take.

Speaking of yesterday's post, I got a comment from a reader who turns out to be in communications at MDA (hi Lucy--yes, she shares my daughter's name). She found my blog as part of her job (trolling social media sites for mentions of MDA--much like when a certain cable company contacted me when I was complaining about our lack of service). Actually, Len used to work in PR as well (and social media in particular) so I was not surprised that someone at MDA had found me. A nice surprise, though, was meeting Lucy today for lunch to find out she had become rather invested in our story! We spent quite a long time chatting over lunch and she was very helpful with printed resources for me to look over, even offering more assistance should I decide to have treatment here. It's nice to have another contact here in Houston.

Which brings my number of people in Houston to three! In addition to Paivi and her husband Euan, one of my old design studio buddies from LSU lives here as well. I honestly had not seen her since we graduated so it was a fabulous surprise to get a FB message from her to meet for supper. We met up last night and headed to a wonderful Indian place in Rice Village.
I spent what remained of my last afternoon alone, lolling by the pool, watching the clouds.
I head home tomorrow morning!

Wednesday, June 20, 2012

And things just got more complicated

I arrived in Houston yesterday and had a lovely afternoon and supper with my friend Paivi who now lives here.
She took me to Whole Foods so I could stock my tiny kitchenette with food. Seems the only food on the hospital grounds or near my hotel is fast food....guess that's how they stay in business, right?

I met with Dr. Pollock at MD Anderson this morning and got a very different view on my tumor.  Here are the notes I took:

This is (and here everyone agrees) a very rare tumor. Only 900 desmoid tumors are diagnosed every year as opposed to 256,000 cases of lung cancer annually. There are generally 3 locations for these tumors; mine is located in my pelvic girdle.

Doesn't that sound rather quaint and Victorian?

There are several approaches to treatment (all of which other doctors have discussed so I will not go on at length about any of them except the one he recommended).

1. Systemic therapy to include drugs like tamoxifen and sulindac. The response rate is only about 20-25% when taken alone or 30-35% when combined. 2/3 of patients have no response at all. Gleevec, which my doctor at Northwestern recommended, only has a 10% response rate. He is not recommending I go this route.

2. Standard connective tissue chemo which has an 80-85% response rate. I asked him why he recommends chemo when all of the other docs I've spoken with do not (because it is not a fast-growing tumor) and he said flatly that they are wrong in their hypothesis. That it's not a function of how fast the tumor grows, it is a function of overall responsiveness.

There is controversy over how to label desmoids. Most doctors consider it a non-malignant cancer. He does not agree based on his 30 years of working specifically on desmoids. He says there are 2 hallmarks of malignancy: one is what we typically think of when we hear cancer, that it can spread throughout the body & transform into other types of cancer. The second hallmark is: does it have the ability to invade and recur locally? If you go with that hypothesis, then yes, it is a malignant tumor.

Dr. Pollock: This is a serious and potentially destructive tumor that, if not treated properly, can have devastating effects.

This was not the best time to be sitting in that room with only my digital recorder for company. Did I mention that, for the first time in my life, my blood pressure was higher than normal?

That said, he does not recommend chemo as a first option.

3. Surgery is another option but again, not one he would recommend right now because it has the potential to be "mutilating".

4. Watch and wait but the rate of growth is unpredictable.

5. Radiation is another alternative and the one he is recommending. Typically with most cancerous tumors, you will see shrinkage and softening of the tumor after the 2nd week of radiation therapy (therapy lasts 5-6 weeks with treatments 5 days per week every day). These effects are not present with desmoids. As long as 6-12 months can pass after radiation before anything starts to happen and then it will start to shrink slowly over long periods of time. He has had patients where shrinkage has been continuous for 7-10 years. Once it has stopped shrinking then surgery is considered. Typically what is left is about 10% of the size of the original tumor.

Mine is in a tricky area to irradiate as I could sustain damage to my rectum, vagina and urethra. He strongly recommended that I seek treatment either here or Sloan-Kettering or Milan, Italy (5-6 weeks in Italy?? I can do that!!), three institutions that "understand desmoids" and can provide targeted radiation therapy thereby lessening the chances of collateral damage. That means relocating for a month and a half while I receive treatment.

The side effects are burned skin, scatter radiation to other tissues and in a very few number of patients, radiation can cause more tumors. Recurrence rate after treatment is 1 in 5 or roughly 15-20%.

This is what he is recommending with the caveat that my case has not been presented at their tumor board yet. That will take place tomorrow afternoon. In anticipation of that recommendation, though, he has set me up to meet with the radiation oncologist on Friday morning.

I asked about my pathology slides and 1. if their findings agreed with Northwesterns (they did) and 2. what additional tests were they running?  Specifically they are checking for beta-catenin markers which is a growth-signaling molecule. 85-90% of desmoids overproduce this molecule. This marker can also indicate whether it will recur. That testing will take 4 weeks to receive and he said it would not have any bearing on the course of treatment recommended right now.

I asked about diet (specifically sugar and an anti-inflammatory focus like eating more plant based foods) and he completely discounted diet as having anything to do whatsoever with this. I am still astounded by this response. I mean, seriously? How can your diet and stress levels and exercise NOT have a bearing on this? So it looks like I will be seeing Dr. Block at the integrative cancer center independently, if for nothing else than to improve my overall health so I can withstand the stress and effects of traditional treatment.

So that is that. I have a free day tomorrow so I'm planning to loll about the pool, read and nap. I don't have the energy to take the free shuttle to the Galleria (even though a pedicure and some retail therapy sounds nice).

Sunday, June 17, 2012

Houston, I'm ready for takeoff

What have I been doing instead of blogging these past weeks? How about hours filling out paperwork, driving to doctor appointments and taping hours of conversations with oncologists and others in the hopes of finding which avenue to pursue in my war with my tumor.

To update you on my progress thus far, I'm going to give a short synopsis of what each person has had to say. Before that though, a huge shout-out to my mom who has spent several nights transcribing my taped consults into Word documents so I could refer to them later.
All that training as a newspaper reporter was not in vain. All of this as she also holds down the fort sharing her breakfast with our two seagulls (MINE?! MINE?! MINE?!--does nobody remember Finding Nemo?)
Honestly, you'd think we never feed them.

To doing a little mending on some blankets...
So, back to the transcription. My first meetings at Northwestern were not taped but I already gave you the gist of those meetings in this post and in this post.

Tuesday I went to The Block Center for Integrative Cancer Care. I met with a counselor first who covered my mental state. Next I had labs where 17 vials of blood were drawn. I will get the results of those tests in 2 weeks. Here's what they tested for:

Coenzyme Q10, total
Fibrinogen Antigen
Folate (Folic Acid), Serum
C-Reactive Protein, Cardiac
Insulin and C-Peptide, Serum
Leptin, Serum
MMP-9 (Matrix Metalloprot.-9)
Vit B12, B6, C, A, E
Raji Cell, Quantitative
Zinc, Plasma or Serum
Prothrombin Fragment 1+2 MoAb
Interleukin-6, Serum
Activated NK/IL-2R Short
Vit. D, 25-Hydroxy

My CBC and CMP results already came back normal. My glucose was elevated but since I had just had lunch that was to be expected. I will probably need to have a fasting test done later.

Next up was the nutritionist. She spent over an hour with me discussing my current eating habits, etc. and then we talked about the role nutrition plays with cancer. Some things of note: 

It helps to look at foods as: is it benefiting me or does it have consequences? So if you’re eating something like a white pasta, it’s devoid of nutrients. It has no fiber, no fatty acids, no minerals the whole grain things have. Also, because the fiber and fatty acids have been taken out, it’s digested much more quickly, and so your blood sugar spikes much more quickly, which is hard on the liver, and the liver starts to put out IGF-1 – that’s a growth hormone that cancer cells feed off of. It also causes your insulin to spike and stay for a longer period of time. So as the blood glucose level goes up, insulin goes up – which also sends growth signals to your adipose tissue, to growing cells that are growing more rapidly than they should be – out of control or unregulated, etc. So we’re trying to rein all that back in. But what that also means is that your liver is protected for longer amounts of time. So is your pancreas, thereby lessening your risk of type 2 diabetes

We like whey protein. In dairy products, there are two proteins. 87% is casein protein, the other 13% is whey protein. The casein protein is what stimulates tumor growth and rapid cellular reproduction in laboratory animals. It also can increase your IGF-1, and that’s the hormone made in the liver that a lot of doctors call “Miracle Grow for cancer.” It’s a good way to look at it. So the whey protein, as long as it’s a micro-filtrated product that isn’t sweetened with evaporated cane juice or any unapproved sugars, we’re absolutely fine with. 

Our diet that we recommend is very low in fat. That has a lot to do with research on estrogen sensitive cancers and testosterone – well hormone cancers of prostate and breast – which as an optimal health clinic, I feel is relevant to all my patients. Because we’re looking at getting you through everything, and then as long as possible into the future without having to return to the clinic.

Then we discussed all the supplements they are recommending to start until my labs come in and they can narrow it down. Some supplements of note:

Curcumin is kind of the all-star right now in the cancer world. It’s a phyto-chemical found in the root turmeric - taken out of the root and concentrated into a supplement form. It literally cuts off growth pathways of cancer. It’s anti-inflammatory, and takes away a lot of toxicities with it. So whether or not it actually acts on reducing growth potential of what’s going on, I think it’s worth a shot. 

I’m going to add our supplements that naturally reduce estrogen in the body, but not so much to send you into menopause. It just helps so when your body is recycling estrogen – we almost have too much on board – we have to reduce how much of that enzyme is recycling in the bile.

Calcium D-Glucarate is a phyto-chemical which is metabolized out from cruciferous vegetables. That can help to change your estrogen receptor from pro-cancerous to non-cancerous estrogen. It helps change it to that very healthy estrogen that won’t play into the receptor. 

IF you do the surgery, whatever treatment becomes clear, email me – definitely – because we may want to play around with your supplements. We also do pre- and post-surgical protocol FOR stickiness. It’s designed around the theory of the micro-metastases being released or left behind. I know it’s not a metastasizing cancer, but it has to do with the “stickiness” of particles being left behind.

Nutri-Essentials is a multi-vitamin without iron and without copper. The Vitamin A is all food-based, it’s not retinol, it’s not chemical based. And there’s moderate amounts of B-1 and B-2. All of those have a lot to do with how fast the reproduction occurs. Iron – we never supplement unless there’s a proven deficiency because it can be incredibly oxidative if you have too much iron in your blood. And copper participates in cancer cell growth, so we just take that out of supplementation entirely.  

Turbo Greens is a green powder maybe a lot like yours, except it’s mostly cruciferous vegetables, so for the case of an estrogen sensitive cell or tumor, a heavy cruciferous vegetable powder is a great idea, because is kind of the anti-estrogen veggies. They’re the ones that have because they regulate what type of estrogens are going to come to the cell. They’re the ones that have endocarbonal, which turns into DIM, which regulates which type of estrogen receptors are going to come to the site. 

My last question was about soy which has made news as a source of cancer because of it's high estrogen content. Here's what she had to say:

When we eat mammalian estrogen, like beef, pork, chicken - and we do get mammalian estrogen from our foods. Milk definitely, because it’s packed with growth hormones to make the baby calf a big cow. That has an effect on our own estrogen. Then if we eat a phyto-estrogen, that has maybe 1/25th of the effect of our own estrogen. So then we eat the phyto-estrogen and have our own estrogen that we’ve made, going around in our body.

There’s one estrogen receptor for that cancer cell. Which one do you want to land there – YOUR estrogen, or a phyto-estrogen? YOUR estrogen’s going to have a great impact on its growth. Phyto-estrogen’s going to have 1/25th impact on the growth cell. So the cell is going to grow significantly slower. So it’s actually blocking YOUR estrogen from feeding the cancer, which is more powerful....but if you’re eating severely processed soy like soy oil, in that case… You don’t want such severely refined foods, but tempe, miso, tofu are absolutely fine. 

Next up was Dr. Block. He started right off saying that MD Anderson and Dr. Pollock was the place for me to be to really address the specifics of this tumor. He has only seen similar tumors but has no direct experience with my rather unique cancer. That said, he did discuss ways in which his center can help "support" me if I do undergo other therapies. We discussed sleep, nutrition, stress management, relaxation training, breath, meditation and exercise. Some things of note: 

...what we do and how we care for ourselves and NOT care for ourselves influences and impact us in ways that stimulate growth. And so there are things that we can do that can kind of quiet growth, we believe, that can be very substantial in, at the very minimum, slow the process down in ways that can have enormous therapeutic benefit. 

For your family, the dietary suggestions make sense for everybody. We know that a diet of red meats and poultry dairy products are going to increase inflammatory cascades, oxidative cascades, angiogenesis, microscopic cancers as they start to grow, tumors. In addition to that, we know that the pro-inflammatory drive from these things have health consequences, regardless  - arthritis development, cardiac risks, cancer risks. So it’s really a good idea to kind of shift your diet toward a more vegetarian diet. And fish is fine. Egg whites are fine. Whey protein is fine, if you want to do shakes with that.
The soup that these cells reside in and depend on to grow is modifiable by how you take care of yourself. By natural products, by food, etc. Some of that chemistry is caused by you, how you care for yourself and your body, your unique genetics. And some of that chemistry is caused by the cells’ discrete chemistry. But in your case, I think it’s your own environment that’s responsible for what’s going on. So right now, this is pro-inflammatory. So you’re creating a sort of pro-inflammatory chemistry that supports the cells. So the more we can get a fingerprint on your chemistries – and that’s what we do with this fancy lab-testing – and your nutritional labs and your oxidative markers, your glycemic levels, we can tailor a regimen specifically to you. Which makes it much easier – we can literally say “you’re high here, we’ll give you this, and do that” and check back to see if we’ve corrected the disruptions in that soup. And the less disruptive that soup is, the better you’re going to do.

So that’s kind of part two of this bio-chemical soup. It’s possible to do it molecularly, although I don’t recommend it. I think it’s way overkill economically for you guys. (LISA – what do you mean molecularly?) It’s possible to take the biopsy tissue from what you already had removed, analyze it further than is done routinely, and looking at all kinds of targets, and then coming in and attempting to work on those targets with natural products or off-label drugs or what-have-you. It’s expensive, and it’s just not justifiable in your situation – from my perspective.

Next we discussed unconventional or experimental methods (off-label drugs) for attacking the tumor that he wanted me to discuss further with MDA. Things like Metformin which is already being researched because...

But what we know is that blood sugars that are slightly elevated, do drive insulin up, and that can drive growth. If I were to give you a drug like Metformin prophylactically, which is a diabetic drug, I would shrink the sugar supply to these cells and likely slow them down. It’s a debate whether that’s a wise thing to do or not, because we don’t have high level evidence to support it. What we have is low-level evidence in a concept that makes sense, and that’s gradually moving into the conventional world in the last year or year and a half, with major conferences carrying whole discussions of using Metformin specifically.

Another thing that could be done at MD Anderson – and I do have to disclose that I sit on the advisory board of the company – is a compound they make called Anbirzel. It’s an oleander extract, and properly dosed, it’s safe. But if you buy oleander on the Internet, it can kill you – cardiac arrhythmias and stuff. This stuff is used with a bunch of cancer patients, and it’s had some very profound effects on stabilizing growth for long periods of time with pancreatic cancer, liver and lung metastasis.

He also suggested that, since they have already requested some unstained slides from my biopsy (actual tissue from the tumor that their pathologists can run tests on separate from the tests already done at Northwestern), I ask them:

how inflammatory is the cancer, because he’ll have looked at tissue. And if it’s a highly inflammatory cancer, it might direct me a little bit more aggressively on how I will go on supplements.

So that ended my 4+ hours at the Block Center.

Next I spoke with a gyno oncologist who also was stumped and out of his league on my particular tumor but he did have high regard for, and has worked with, the oncologists at MDA. He gave me some really good questions to ask about alternative therapies such as hyperthermia, infusional therapy, destructive ultrasound and proton therapy. He stressed that surgery should only be a very last resort if there is no other choice since it is in such a "touchy" place. He was not surprised at all that Pollock would want to see me because, as he phrased it, "it's because you've got something weird."


He also suggested this:

The other thing you might say to them, and not to be confrontational, is – ask them, “Should I go someplace else that is as smart as you about this, and that I should get a third opinion from?” They’ll generally tell you. The good thing is, they see lots of weird pathology things there, and there isn’t anyplace like that in Chicago. I would have to say Mayo Clinic’s not even a referral place now. They do a lot of volume of certain things, but there really are probably only two or three or four real referral centers now in the United States. (Sloan-Kettering, MDA, Cedars-Sinai in Los Angeles, Johns Hopkins for pathology).

the pathology could give a very very very accurate assessment of the tumor itself, histology-wise, could be very helpful in determining what happens.

Histology is when we take a very thin slice of the tumor or growth or whatever it is, and stain it and look at it. Hormone receptors and all these other markers are like little side dishes of things that contribute to the behavior of the growth. So the histology is going to be very important – first to confirm – has it been looked at by anyone except the people at Northwestern who did the biopsy? (I told him no) So it’s good to have the pathology just to make sure it’s not something different than what they initially thought. The fact that they want the blots is good, because they’ll probably do some other testing of it. For some reason, Johns-Hopkins seems to be the pathology Mecca for pelvic “stuff.” I’m sure if you bring that up to the MD Anderson people, they’re going to cringe at the idea. The pathologist at Johns-Hopkins is Kurman, and he’s the person we send all weird pelvic stuff to. It may not be necessary. So I would ask them, “Do your pathologists agree with the Northwestern pathologists, or do they think it’s different? Or is there anything in these other tumor markers or anything that helps guide us as to what to do?”

The best thing is, this appears to be a very slow-growing, indolent, not involving any vital structure, thing. So I think anything we can do to arrest that will be of benefit. I know I’m kind of repeating myself – but you could ask them: Is there any thing that you guys can think of? Let me give you an example: we do destructive ultrasound on fibroids that we never used to do before. We didn’t know that it would work. But we ultrasound at very high intensity and it makes them go away. This type of thing that you have, I don’t know whether it’s even been tried for that, but it’s an idea that somebody should think about. So I would ask them very bluntly, “Do I need to go somewhere else? Do you guys know what you’re doing?” I’m kind of kidding a little bit – but I’d press them a little bit. “Are there things like destructive ultrasound or things like that, that can be tried?”

The reason I’m telling you that – the secret to this is aligning this as much as possible with whatever tumor we treat more commonly, and have success in treatment. And I’m sure that’s why the guy suggested the Gleevec, because probably he’s thinking this is probably very similar to what this is. That’s good – because those particular things grew slowly, were indolent and problematic.

I guess the other question is, “Is there any evidence this thing is growing at all – or has it just kind of stopped?” Because the only two scans show it to be the same size.

And that was that. I am armed and ready, notebook, files, pen poised, new batteries in the digital recorder, questions lined up. I head to Houston on Tuesday.

The hardest part will be leaving my girls for the first time in their lives.

Thursday, June 14, 2012

Her first graduation

Lucy said her first 5 word sentence last week:

I want more toast please.

What was more exciting than that was that I actually understood her! Granted, it was in context (I was standing there with extra toast) but still. She is trying so much harder to communicate--talking away, gesturing wildly until she finally just grabs my hand and leads me to what she wants. More and more often, I am able to figure out what she is saying before we take the field trip to the object in question.

Yesterday Lucy had her final speech therapy session...she graduated!
Annie did an evaluation and she tested well. She is still unintelligible a good bit of the time but there is definite improvement. Annie said we could discontinue the therapy because she gets a good deal of it directly from me and then Kate yammers at her for the rest of the time. We will go back in October for her one-year-home evaluation just to be sure that what I am doing with her is helping her progress on track.

As a reward for graduating I took Lucy to a new playlot in Lincoln Park. Nana had Kate at home so I was able to spend a good amount of one-on-one time with her which she thoroughly enjoyed...when she wasn't hugging the camel.

Tuesday, June 12, 2012

Love Letter, Month 29

Dear Kate,

You are 29 months old today. 

We've had an adventure-filled month! The weather has finally decided to take an extended turn for the better so we've been outside enjoying it as often as we can.
You and Lucy love to make up new games to play. In this one, you both dip your hair into the pool and watch it drip onto the pavement before wiping your faces off on Nana...which is why she has a large towel on her lap!
Speaking of Nana, she is visiting us for most of June and you are loving every minute of it. You have time every day where you and Nana sit on the couch and read together.
We went to your second Kids and Kites Festival in Lincoln Park where you had a lot of fun dragging Lina's kite around.
We also made another trip to the aquarium but this time you enjoyed it so much more. You marveled at turtles and dolphins and jellyfish and crabs.
I'm not sure if the enormous sea crab stirred something in you but you have now developed a pretty good fear of bugs. A "helicopter" seed flew into your side of the stroller this weekend and it sounded like you were being murdered. You were so upset you could barely get the words out to me that a bug had flown around in your face. No amount of physical evidence, i.e. the seed, could convince you otherwise.

You are enjoying more physical feats now and love showing them off even more. You will hop hop hop!! to anyone who comes to visit us. You are even hopping off of curbs and on trampolines
when you aren't resting...

As usual, you make me laugh every single day and I love that about you. Here are some of your latest witticisms:

Me (to you and Lucy): You both look very pretty.
Kate: Yes we do.

Kate: I need to poop.
Nana: Do you want to use your potty?
Kate: No, there’s not enough time.

Daddy could hear you in your room shoving your drawer closed and grunting Uh Uh Uh! Alas, it just wouldn't close. You finally turned on your heel and said, “I don’t have time for this.” 

Wow. Guess I need to really watch what I say around you.

You language is extending to learning the days of the week, the months of the year, counting objects up to 7, learning to spell your name and asking WHY? ad nauseum. OMG. Stop. It. Already with the Whys! Your daddy seems to have figured out how to stop you in your tracks:

Daddy: I'm going to put some medicine on your boo-boo.
Kate: Why?
Daddy: The medicine helps it heal.
Kate: Why?
Daddy: The medicine prevents dirt from getting into the boo-boo and helps it to heal.
Kate: Why?
Daddy: Because it gives your boo-boo a chance to heal.
Kate: Why?
Daddy: Because every time you're injured, your body creates anti-bodies that travel through the bloodstream to the site of the boo-boo. Those anti-bodies help prevent infection and help the blood coagulate which helps your boo-boo get better.
Kate: crickets....

Score one for daddy.
You memory constantly astounds us. You can find virtually any toy in the house even if it wasn't put back where it belonged the night before. You squirrel away your toys in various locations and can lead me straight to them when I ask you where they are. You memorized the entire Mother Goose book after only a few nights of listening to me read it to you. You remembered that I promised you could watch Mickey Mouse Clubhouse if you would lay down and rest for an hour while Nana, Lucy and I took naps. You ended up falling asleep yourself only to wake 2 hours later. The first words out of your mouth when I opened the door to get you were: 

And now I can watch Mickey Mouse Clubhouse?

You got your first official salon haircut yesterday. You picked the airplane to ride in and then sat there quite calmly as you received bangs.
 You especially liked having your hair blown out.
I don't know why I am always amazed at how my life has changed since you were born. You are growing up into this little PERSON with thoughts and ideas and opinions (and the vocabulary to express them repeatedly). You delight in helping me with small tasks like throwing things into the recycle bin or putting fruit in the cup for smoothies.
You are obsessed with having things on your face and will draw on it every chance you get.
Which is why you were over the moon when I suggested we get a flower painted on your face at the recent Andersonville Midsommarfest.
And why we went back the next day for another one.
You are my little love sponge. Thank you for reminding me every day why I wanted to be not just any mama, but your mama.

Monday, June 11, 2012

First salon haircuts!

It was Lucy's first haircut with us and Kate's first haircut at a salon. Both of them did very well!
Kate went first and enjoyed flying her airplane as she got a cut and blow dry...
We decided to do bangs with Kate as she's not real fond of clips or bows every day.
 Sitting on Nana's lap while Lucy gets her hair cut.
 Lucy chose the pink old-time convertible to ride in as she got her haircut.
We got the back scraggly layers evened out and opted out of bangs since she has a huge cowlick in front.
She was a little unsure of the blowdryer but soldiered on without much more than the pained expression you see here.
Here's Lucy's finished haircut!

Sunday, June 10, 2012

23 years

I have now been married for 1/2 of my life. To the same person even.

A lot of people have asked us what makes our marriage work. I could say things like love, mutual respect, or just plain stubbornness and all of those would be true. I could even now say the girls keep us together which would also be true. Honestly though, it all boils down to the promise we made to each other and our families 23 years ago:

...to have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, until death do us part.

Happy Anniversary Len. I love you still. Let's see what the next 23 years holds, shall we?

Saturday, June 9, 2012


We went to the annual Andersonville Midsommarfest street festival today. The girls got their faces painted. Lucy held on to Len's hand the whole time as she was unsure who this person was wielding a brush around her face.
Kate sat placidly calm throughout her painting.

Next we met up with the teacher from Little Linguists--we saw her for Chinese New Year and both girls remembered the lion head sitting there to the right.
 She wrote both their names out in Chinese characters for them.
Lucy very much enjoyed the music.
Both girls got into dancing for a bit:

Nana enjoyed watching from the sidelines!
It was super hot today so we headed home after lunch. Lucy napped for a very short time in the stroller and Kate didn't nap at all so we cooled off inside for a bit and then headed down to the pool for the rest of the afternoon.
A little bit of reading before bed and Saturday is a wrap!


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